Stigma is defined as a mark of disgrace associated with a particular circumstance, quality, or person, such as “the stigma of mental disorder”. Synonyms include shame, disgrace, dishonor, humiliation.

Cancer carries a stigma for many people, but seldom is it as apparent as it is in the lung cancer community. Not everyone who is stricken with lung cancer smokes! Environmental causes such as radon, asbestos, and second hand smoke also play a role. But the stigma of “you must have smoked; you must have caused your cancer” unfairly lives on. The Lung Cancer Foundation has a very thoughtful page dedicated to the stigma of lung cancer.

Blog Post:Just Not a Just World
“There are two kinds of people. Those that believe life is fair (everything happens for a reason) and those who don’t (shit happens)…However, most of us grew up believing in a just world, a well ordered place where sensible and good behavior was rewarded and risky or bad behavior duly punished. This viewpoint not only shaped our moral code, it lent us an invisible cloak of safety.

Belief in a just world is the thinking behind the stigma associated with a diagnosis of lung cancer. Stigma is defined as ‘a mark of disgrace associated with a particular circumstance, quality, or person’. In the case of lung cancer, our diagnosis is inextricably linked to shame and a blame the victim mentality…”

“…Did you smoke?” and, unlike my never-smoker brothers and sisters, I respond yes. Yes, but I quit a decade ago. Yes, but I know lots of people with lung cancer who never smoked. Yes, but I don’t deserve to die!

I remind myself that the question usually is not intended to judge me, but rather the inquisitor is gauging their own risk. Smokers and ex-smokers usually follow-up with questions about my smoking history, perhaps hoping my history was worse than theirs. Never-smokers usually follow-up with questions about a loved-one’s smoking history, or about second-hand smoke. I patiently respond with the things I know, followed by “anyone with lungs can get lung cancer.” And in the end, many walk away still thinking that I deserve what I got, most without showing a bit of compassion. And I forgive myself once again, and tuck away the guilt and shame until the next round…”

…Janet Freeman-Daily, a retired aerospace systems engineer and metastatic lung cancer patient from Seattle, witnessed so much stigma after her diagnosis, she became a patient advocate.

“There’s lots of educating to be done around lung cancer,” said the 59-year-old, who’s currently involved in a clinical trial and has been NED (no evidence of disease) for two years. “I’ve been shocked by people I thought were relatively open-minded who’ve said to me, ‘If someone smokes, they deserve lung cancer.’ Yes, it’s healthier not to smoke, but it’s not a sin that warrants the death penalty.”

Unfortunately, even patients who are diagnosed with the disease sometimes feel that it does.

“[The stigma] affects patients very strongly,” she said. “I have two friends who knew heavy smokers who were diagnosed and they both said, ‘I deserved this’ and refused to get treatment.”

Freeman-Daily said the stigma also impacts how health care providers care for patients…

“Consider Lisa’s scenario: In the Fall of 2013, when she was 40 years old, she went to her doctor reporting fatigue and a cough that wouldn’t go away. Lisa was a fitness instructor, had never smoked, and had eaten a healthy diet for decades. The doctor never considered lung cancer a possibility, and prescribed codeine cough syrup. When the cough did not abate, Lisa returned to the doctor, who then prescribed an albuterol inhaler and antibiotics. Still, the cough persisted, and Lisa even began coughing up small amounts of blood…

…after months of misdiagnosis, she was finally diagnosed with Stage IV lung cancer, which has a survival rate of less than 10 percent. The situation was so dire that Lisa was offered “palliative” chemotherapy less than 48 hours after her diagnosis…

If Lisa had smoked, her doctor would have known she was high risk and therefore likely ordered a CT scan sooner. But because her medical history did not align with the common perception of who a lung cancer patient is, her diagnosis came late. If we can catch lung cancer early enough for surgery, then we can cure patients. Delayed diagnosis is injustice.”

Young, middle aged or old, a nearly universal theme of cancer is social isolation. This week we listen to voices from the UK, Canada and from the young adult ca…

2 Comments

Yes there is a stigma – a huge one. I have two cancer diagnoses under my belt. I used to work with a woman who said to me one day, not knowing about my medical history, ‘as soon as I hear the word cancer, I write the person off as cancer is going to get them in the end’. It took all my might not to say something (or smack her in the face) for that. But I held my breath and walked away and never thought of her the same way again.

Another aspect of stigma is also people saying “you’re fine; you’re cured” when you’re not. Their refusal to face cancer is also very hard and isolating for the patient. Been there, done that. I write THEM off!